The following extract is a transcript of a speech given to Federal Parliament by the Member for Warringah, Mr MacKellar.

Extract from HANSARD - 7 October 1992
Mr MacKellar (Warringah 5.53pm)

In addressing the estimates of the Department of Health, I want to draw particular attention to a disease which has received some attention in recent times but not nearly enough. I say at the outset that I have a particular interest in this disease as my youngest son suffers from it. I refer to a disease which has become known as chronic fatigue syndrome. It has various names. It is also named myalgic encephalomyelitis, post-viral fatigue syndrome and chronic Epstein-Barr virus infection. It is a condition characterised by the subjective complaint of extreme fatigue, exacerbated by minimal physical activity.

The fatigue is associated with an inability to perform tasks that were previously undertaken with ease, and is accompanied by a combination of other symptoms, including difficulties with concentration and memory, myalgia, headaches and depression. I am told that the majority of cases appear to occur sporadically in the community following an acute infection which delineates what the scientists call a 'pre-morbid status' from the subsequent ill health and disability.

There is an increasing awareness of CFS, or ME as some others refer to it, within the community, but for many years it has not been effectively diagnosed. This is simply because it is almost impossible to have one simple test to diagnose it. From my enunciation of the symptoms, people present as suffering from some viral illness or from a continuing flu-like sickness.

When the normal tests are done on people nothing turns up as being unusual-but the condition persists for weeks, months and years. In some cases it goes on for many years.

There is no known cause for CFS at this stage and no known cure. When one mentions the disease it is amazing how many people say ëyesí, I know somebody who has got that; You should see so and so. The cures range from herbal remedies right through every facet of both the formal and informal health fields. It is a very debilitating disease because, dependent upon the severity, it may range from a situation where sufferers may literally not be able to get up in the morning, or may not be able to open their eyes, to the extent where they can get up and have a shower but then have to go back to bed or where they are absolutely exhausted after walking up a small row of steps or crossing the street. The severity of conditions ranges from that to less severe problems.

The diagnosis of CFS has been particularised in Australia and Australian methods are now being used world-wide. However, it is not a new disease. In the 1950s it was noted in Great Britain and it may have been present many years ago. Due to the difficulty of diagnosis up to this stage, it has not been taken seriously by many medicos throughout the health systems not only here in Australia but right around the world. Only very recently has it been recognised as an identifiable disease with real effects and not something which is in the mind of the sufferer.

One may have heard of it under the title of yuppie flu. It was at one seen to be very much associated with young, upwardly mobile professional types. It seemed to affect young women from 25 years onward. More women are affected than men, but recently we have had an increasing incidence of the disease amongst younger people. My son is just 17 at this stage and he has had it for a year and a bit. I bring this matter to the attention of the House tonight because this disease is far more widespread than was previously thought.

The aspect I want to bring home to the House tonight is not only the prevalence of it, which is much greater than was otherwise thought; not only that Australians are at the world forefront in identifying the disease and have developed the criteria for diagnosis; but also that very little, if any, research money has been made available to those studying the disease within Australia. It is that issue that I want to bring home to the Minister for Health, Housing and Community Services (Mr Howe) and to the chamber tonight.

This is a disease which is far more prevalent than was otherwise thought. Many people who have suffered from it and who are suffering from it have been dismissed in the past as having some psychological problem. The effect of that on their well-being can only be imagined. To be told that 'It is all in the mind', 'There is nothing really wrong with you at all', 'Forget about it' and 'Go and think positively', when they have extreme difficulty coping with the symptoms that I have outlined, really has had a massive impact upon the sufferers.

We need to have a much more sympathetic approach to research. It is obviously an immune system problem. It has been described to me as the reverse of AIDS. We all know that the immune system with AIDS breaks down completely. It appears that with CFS, rather than breaking down, the immune system is constantly in action. This gives the fly-like symptoms that one experiences when one's immune system is combating a viral infection. It is obviously of great economic significance because it costs the Australian community $65m per year, according to this study. It is time that some research money was made available from the NHMRC to do something about it. There are some very good researchers in Australia who have knowledge and capacity in this area. I would urge the Minister for Health, Housing and Community Services and the Government to give the matter the closest attention.

Acknowledgment: taken from ME and You, Newsletter of the CFS/ME Society of NSW Inc., March 1993.

Reprinted from Emerge, June 1993.